Tim Schmanski's blog

WOW!!!!

What a complete and exciting day for Tori!! Tori continued to deliver ALL DAY after my very positive mid-day update today. She was all so vibrant and lively and she offered up smiles to everyone visiting her including various doctors and nurses who stopped by throughout the day!! She seemed especially happy to see Whitney again and the feeling was very mutual between the two. Tori's activity today was very encouraging to us all to say the least and I hope she can just keep it up!!

KEEP FIGHTING TORI!!

Tori was thoroughly exhausted when Maria and I finally left the hospital at 9:15pm tonight. Again, she NEVER slept today so I'm positive she will sleep soundly tonight. Tori gave us three great big yawns just as we left her room. She offered us one last entertaining moment just prior to us leaving. One of the nurses had just finished braiding her hair and she remarked that it would be easier to manage if Tori had a haircut. I then stated "Maybe we should just give her spiked crew cut like her brother Brendan?!?" and Tori responded with a huge smile. But the smile then turned quickly into one of Tori's anguished looks and we were left wondering if she thought the comment was serious!! We quickly calmed her down by repeatedly saying "We're just kidding Tor!! We promise we would never do that to you!!" :-)

Tori also went a full six hours without the respirator today and she performed wonderfully. Her temperature also remained right around 37 degrees Celsius all day. She continues to provide us with some great coughs and the mucus is now clear just like standard saliva. It is no longer yellow and all of the cultures taken on her have returned negative for any 'bugs'.

We received a little bit of bad news concerning her next landing spot as it appears the Utah Valley Medical Center cannot take her in yet... Tori must be able to respond to basic commands before they can take her and provide adequate therapy. She's not quite there yet unfortunately. So we are now going to seriously consider the Health South Hospital in Sandy which is still 35-40 minutes away. The other option is to find some home health care help and bring her home. The nurses tonight told us that the physical therapists CAN just come to our home and perform their magic. We were originally terrified of the home option when it was initially presented to us a couple of weeks ago but we have obviously learned a lot since then. If we could find just the right help this option may become a reality. Our Discharge Planner will begin investigating for us on this front tomorrow. It looks we will be in the PICU until at least next Tuesday now.

Hello everyone!!

Tori has compelled me to post a mid-day update today!! She FINALLY slept very relaxed in a nice and cool environment last night and it is paying off now. I just spent about four hours with her and she was totally aware and awake!! She is making up for the past few days by smiling so, so much today!! I am sooooo tempted to take a picture of that beautiful face and smile of hers for all of you to see!! Maria isn't very keen on that idea quite yet but perhaps if we wash Tori's hair and 'doll' her up a bit it might be ok ;-) We shall see.

Isn't it amazing that if you drop the temperature in the room from the low 80's to about 72 degrees that Tori's temperature follows?!?! Go figure... Tori went from 39 degrees Celsius to a cool 36.1 presently and she is very relaxed and comfortable and it shows greatly in her behavior and demeanor!! She has also been off the respirator for over four hours and her breathing rate has been between 15-20 and her O2 Blood Level is between 95-98%. She is doing absolutely great today!!

Two more positive notes. She hasn't really given us a hand grip on command but today it appears to me that she might be giving a slight 'fish hook' grip with the ends of her fingers on top of my finger or hand. I will continue to experiment with this throughout the day. I've also been playing a little 'hide and seek' with her to see how well she can locate me via my voice. She is pretty good at it!! It is exciting to see her eyes scan and focus around the room while trying to locate me. I am also typically rewarded with a smile when she finally locks onto to me so I'll play this game alot!! :-)

I'll post more later tonight!!

Thank you all!!

-Tim

The air conditioning problems at the hospital are continuing to cause problems!! Tori's room was warm to hot (75 to 80+ degrees) all day again and I finally resorted to making them at least get Tori a fan tonight before I left the hospital at 10:45pm. As Guy pointed out in his mid-day update, the 4th floor AC was totally off for a while today and that is the infants section!! There are ALOT of upset and angry parents patrolling the hallways lately at the hospital and their frustrations are totally justified. It is still beyond belief that they are having so many power outages and AC issues...

Maria is actually going to spend the night at the hospital with Tori to make sure she stays cool. Her temperatures today ranged from 37 to 39 degrees Celsius (37.0 degrees Celsius is equal to 98.6 degrees Fahrenheit or normal body temperature). Tori was a little bit more responsive today but she is obviously still very uncomfortable with her mild fever and the room temperatures. She is almost lethargic in her actions and Tylenol is continually administered to her throughout the day. She did breathe without the respirator for four hours today and she did great with all things considered!! Her blood oxygen remained at 94-96% throughout the trial and her respiratory rate ranged from 25-35 breaths per minute which is very good as well. They placed her back on the respirator after the four hours and they are now on a four hours on and six hours off cycle.

Tori continues to cough every now and then but it is not continuous coughing like the previous days. Only Two to four strong coughs and she is done. She also seems to be getting more accustomed to the coughing as she rarely gets upset anymore.

That is pretty much it for today. Hopefully with a cool night's sleep and a cooler room tomorrow we can get more response and awareness out of Tori. We really need to see Tori in a pleasant and comfortable mood again...

Thanks,

-Tim

Guy and I have now decided that each time a doctor or nurse asks "Are you studying in medicine?" we will reply "Yes we are and we have been attending Google.com University now for more than 22 days!!" :-) We've also been in the PICU for that length of time of course and you actually learn quite a bit while being in there. It is somewhat entertaining at times to ask and present very tough questions to Tori's attendants and witness them sometimes heading to the internet themselves to look up the answer. No, No - We aren't just teasing them as all of the questions DO indeed directly relate to Tori. So we really don't mind asking them at all. I will try and include the technical references in my updates for all for you to do your own Google.com research if desired ;-)

At 3:00am or so Monday morning Tori began to display some symptoms of the Thalamic Storms I mentioned in yesterdays update. Her fever returned, she began sweating profusely and her arms and legs tensed up occasionally and shook for about 3 hours. She even threw up at one point during the morning. This episode completely wore her out for today so we opted to let her rest the entire day. The ventilator was left on her and she more or less slept all day. She had a nice, low heart rate and excellent blood oxygen levels and she was completely relaxed. She had a slightly raised temperature throughout the day and there wasn't much interaction with her other than the seldom and slight eye openings from Tori at times. Doses of Lorazepam also began today which are supposed to suppress the supposed Thalamic Storms.

The doctors also feel the Keppra will not be completely out of her system until tomorrow afternoon even though we quit giving her any doses early yesterday. They are continuing to give her Valproate which reduces the Myoclonic seizures like Keppra. This is the drug they will reduce next if Tori does not exhibit any Myoclonic seizures during the next couple of days.

Tori also received a new Trach today and she actually coughed up a mucus storm which sprayed the Trach doctor when he was installing it!! The doctor took it good though claiming "It's just an expected part of the job for me..." All in a day's work I guess. All in all today, Tori rarely coughed or had to be suctioned but she DOES have a verified pneumonia in her lower left lung. It was caught very early and she was placed on an Antibiotic immediately. Sorry, but I didn't catch the exact one she was given...

I cannot believe it but today marks Tori's third week of staying in the PICU (Pediatric Intensive Care Unit) at Primary Childrens Hospital. I can distinctly remember speaking with several families during our first couple of days there who had already been in the PICU for three or four weeks and I thought to myself 'That is unimaginable?!? How in the world are they handling it so well?!?' Now here we are and Tori and the rest of us are probably the most senior 'veterans' of the PICU. Unfortunately, and most definitely, it is NOT a label or title that is wanted by anyone... We have met so many wonderful, loving and caring people during our stay in the PICU and we have also seen, experienced and learned so much about life and the challenges it presents. To put it very bluntly, there are many children who do not make it out of the PICU... I honestly wish that everyone could spend ONE DAY in the PICU to realize how fortunate they are. I truly believe the experience of just being there for that day would be life altering for everyone.

Unfortunately for us, Tori's day was not nearly as pleasant as yesterday. She had a continuous fever throughout the day and it reached a temperature of 39 degrees Celsius or 102 degrees Fahrenheit. The air conditioning has also been very poor in Tori's current room and the temperatures hovered close to 80 degrees or more inside. We have been battling this for a couple of days now and we are demanding that it will be fixed tonight or we are moving rooms!! Tori also had her respirator removed very early in the morning so her breathing was already very hard when we arrived today and her blood oxygen level ws low as well. Tori was sweating badly and it was very evident she was uncomfortable and restless throughout the day as well. No smiles to speak of today... Only an anguished face and tears... She continues to have a lot of mucus in her lungs and she either coughs it out or gets it sucked out and she likes neither of those options. Tori also seems to realize that there is painful area in her neck where the Trach is. She now has the power in her arms to swing them up to her neck and at times she has actually hit and knocked off the ventilator... This is something new that we must be very aware of and watch for.

Hello all,

Tori had a day filled with stimuli and activity primarily because she had 15-20 visitors today to which she responded very well. She was awake again for most of the day and she also served up the most smiles we have seen to numerous people. She even threw one out to a doctor who was checking her belly with her hands!! So it is NOT just Maria, Guy and I who have personally seen the smiles now!! Some of the timing regarding her smiling is also intriguing as it appears that Tori has not lost her sense of humor. At one point today Guy and Maria threw a 'short man' type joke my way and Tori responded with smile. I personally didn't think it was too funny and I'm not that short but oh well... ;-) Later, as the frenchman Guy was speaking in his native tongue to her I told Tori to tell him to quit speaking spanish to her which drew another nice big smile. Now this next one is the real topper!! The biggest Tori smile or even grin drawn today was immediately after Maria began complaining about Tori's $80 text messaging bill!! She really seemed to enjoy that one!! :-) We are always asking ourselves whether this behavior is purely coincidental but that theory is very hard to believe when the behavior is witnessed live in person. The timing is absolutely right on cue.

Tori did have a 30 minute span today where she coughed and coughed to get all of the mucus from her lungs. It completely wore her out and she had to be placed back on the respirator for a while to get her blood oxygen level back up. She also had a very long and nice nap afterward and the coughing episodes after her nap were not nearly as extreme as the ones earlier in the day.

As Guy mentioned in his mid-day update, we toured the UVRMC Inpatient Rehab Center again today and it is definitely now our top choice for Tori. We met with several of the nurses and respiratory technicians and they all seemed very nice, knowledgeable and interested in Tori. We will begin pursuing the next set of steps necessary to get her there on Monday.

Hi again,

Tori seemed to spend more time today resting when compared to yesterdays activities. When she is awake she continues to be aware and responsive of sights and sounds. We have also noticed that she is raising her arms much more lately and resting them on her chest. Her reaction to the decreased Keppra has been very good and the doctors would like to decrease it to zero if she continues to respond well over the next wo days. The zero amount of Keppra step does make us a bit nervous... If she can avoid the Myoclonic seizures with no Keppra administered they will look to decrease the Depacone next. Tori also spent 6 hours or so breathing on her own and her cough is very, very strong!! She does have to be suctioned frequently as her lungs are filled with mucus right now. That is actually a GOOD thing because it shows her body is fighting off the bad stuff in her lungs. Maria and I have been doing alot of the suction ourselves. Tori still doesn't like it too much though... We believe her throat is still very sore from having the ventilation tube in her mouth for so long.

Tori had many visitors today including Mike, Tina, Russel, Ashton, Melanie, Brandon, Deanna, Mark, Julie, Shaid, Grandpa and Grandma Schmanski and I think that was it.

I spent my morning today near home visiting and touring about 7 health care facilites and the Utah Valley Regional Medical Center (UVRMC) Physical Therapy and Rehabilitation Center. Maria and I also visited the Health South Hosptial in Sandy Utah which is about 30 minutes away. I have found that Rehab Centers which are tied to a hospital are cleaner and provide a more 'professional atmosphere' than the private Rehab Centers. Having actual doctors and some serious medical equipment nearby is also more easing in our minds. This is only my opinion and it's based on everything I've seen to this point. Maria and I will probably decide on one of those two hosptials after we visit the UVRMC again tomorrow. It is about 10-15 minutes away from our home and that alone would be soooo great!! :-)

WOW!! Did I mention yesterday that today should be an interesting day?!?! I am creating this update early tonight since there is alot to elaborate on.

Today began when I told Tori "Good morning Tori it's your Dad" while she was in a complete sleep. Tori immediately opened her eyes very widely then proceeded to cry very hard with that absolutely anguished look on her face. She cried uncontrollably for 20-30 minutes as we tried to calm her and it was another one of those so hard to witness diplays of emotion. Tori had Maria, the nurse and I in tears right with her and I just don't know how many more times I can see her in a state like that... I very badly wish I knew exactly what she is feeling, but I don't.

The rest of the day was a treat compared to the morning!! First off, Tori breathed on her own for at least 8 hours today and was awake for almost the entire day as well. Secondly, Tori gave us some of the big smiles we have been waiting for!! And better yet, she did it in an unsolicited fashion meaning we didn't ask her to smile for us - she just did it on her own :-) When Shaid Depalma approached her and said "Hi Tori!" an immediate grin and smile appeared on Tori's face. We realize those smiles are very small things in the BIG picture but they sure do HELP ALL OF US to see them!!

All in all, Tori is soooo much more active and awake with the 50% Keppra reduction. She also has had NO Myoclonic seizures to this point and if she can go another day or two they will cut the Keppra even further. They might also begin to decrease the Depacone which Tori is taking as well.

Tori was also mentioned along with Whitney in the New York Times today!! Guy posted the link in another BLOG entry so everyone please read it. From what I understand it is the first article of a 3 article series so there should be more. I believe some the Dance Club team members are going to try to be in the crowd for the Today Show on NBC tomorrow morning. Keep a good look out for the PRAY4TORI Signs!!

Hello everyone,

Today was a busy day for not only Tori but for Maria, Sophie and I as well.

Tori is recovering nicely from her operations but she is still taking some pain medication which seems to make her even more drowsy. She was still awake for much of day and the ventilator was removed for approximately four hours. She was breathing through her Trach completely during this time. This exercise will be repeated through the next few days to make sure Tori can handle her breathing on her own. Once this occurs and the Trach is healed she will be listed as 'Stable' and we will be able to relocate her.

I was not able to solicit a smile from Tori today so I tried another tact. I finally demonstrated and asked her to move her jaw and mouth around in a circle and she actually complied immediately and did it. She did it only once, but it happened and the nurses witnessed it. Tori also continued scanning the room and focusing on objects during her awake times. She also really seems to enjoy her daily massage on her legs each morning.

We are also cutting Tori's Keppra intake in half tonight starting at 8:00pm. She gets two doses a day, one at 8:00am and the other at 8:00pm. We are experimenting to find the exact levels needed to prevent her Myoclonic seizures. The belief is that the less Keppra she takes the less drowsy she will be and hopefully the more interaction she will have. This should make tomorrow more interesting for sure.

Maria, Sophie and I also went to visit the South Davis Hospital where Tori was scheduled to go next. One of the probelms we have with this hospital is that it is another 20 minutes further from our home in Orem. The wrong direction for us... Our commute would be at a minimum one hour and 15 minutes one way. We were given the tour at 11:00am and to be perfectly honest with everyone it was eye opening and depressing. Seeing all of the long term patients with various and serious disabilities made the reality of Tori's condition hit home very, very hard. Maria and I were in immediate and complete agreement that Tori would not be spending any time in this facility or any like it. We would much rather give her support a shot on our own and have her at home with her family, friends and some professional home care help. I am still going to research and personally visit some more Rehabilitation Centers in the Orem area and if a one fits the bill it may be used as an interim solution until we get our home prepared. So more touring for Tim is on the schedule for tomorrow.

I'd like to give a BIG THANK YOU to Guy today for providing almost live BLOG updates throughout the day!!

Tori was awake again when we arrived this morning and she went into her surgery at 10:00am or so as Guy mentioned. Maria and I went outside to make some phone calls and when we returned ALL of the lights were out inside the hospital. As we wound our way through the pitch black halls we finally bumped into a hospital worker who assured me that there was emergency power provided in the surgical rooms... The lights came on after about 5-10 minutes and shortly after that our surgeon came out and explained that they were only able to get the G tube completed. The Trach would need to now come later which meant more anesthesia for Tori...

From what I understand, the power outage started with the main provider Utah Power going down and each of the 4 backup stations also failed!! Unbelievable isn't it?!?! The emergency generators then kicked in and they are unable to power the entire hospital including some of the equipment in the surgical rooms. One of the doctors in the PICU mentioned that a open heart surgery was going on during the outage and the only light on was the one attached to the top of the surgeon's head... Very crazy to say the least...

Tori went back in for her Trach at about 7:00pm and as we all wished her well before the surgery she broke out in tears again and had that very grimacing and saddened face. It is soooooo tough to witness and both Aunt Laurie and Sophie were emotionally moved and in tears again themselves. Again, I know in my heart she DOES at least hear us!! Tori was then back in her room after the Trach surgery around 8:30pm. We all could finally see our Sweet Baby's mouth again!! She was still under heavy anesthesia at the time so we can hardly wait until tomorrow morning when she is awake. Hopefully tomorrows update will include a description of a totally unblocked smile. We shall wait and see.

Thank you all so much again for your prayers and support and it is great to see that some of you are sharing your own personal experiences with Tori on the site. I have learned so many new things and have found out so much more about Tori's overall goodness by reading all of the journal entries, BLOGS, Comments, etc. Please keep posting!!